A donor is never forgotten

A donor is never forgotten

Dr. Anson Cheung has performed more than 200 heart transplants. Because donated hearts are scarce, he says, ‘we want to give it to the one that will benefit the most and who will take care of the organ.’Jason Payne
/ PROVINCE

Cardiologist Dr. Mustafa Toma (left) with patient Lindsay Schneider, whose three-year-old son Brayden, she says, has been asking her, ‘Mom, when you get your new heart, you can pick me up?’ photos by jason payne — pngJason Payne
/ PROVINCE

Twenty-year-old Tyler Smith is catching flak from his cardiac nurse at St. Paul’s Hospital.

“He has gained a lot of weight,” says RN Carol Imai, who had last seen the young Revelstoke man six months previously.

Smith, who keeps accounts for an auto-repair garage, has a heart that didn’t originally belong to him. Last year, suffering from hypertrophic cardiomyopathy — a usually hereditary condition that thickens the heart and is most severe in young people — Smith received a heart transplant at St. Paul’s. As custodian of someone else’s heart, Smith is subject to chiding from medical staff if he doesn’t follow a strict health regimen.

“We’re giving them a new chance at life and we want to make sure they’re doing the best they can,” Imai says. “You have to, I think, honour the donor. In order to be good stewards of the heart, they have to do as much as they can to be the best people that they can be. The only way to do that, I think, is to see them frequently and keep hammering home the message.”

Smith’s heart problem began when he was four, and worsened steadily.

“By the time I was 18, I was pretty much ready to die,” Smith recalls. “It’s not a fun life, living when you’re in bed all day every day.”

Repeatedly, he was misdiagnosed. His breathing trouble was mistakenly attributed to exercise-induced asthma. Finally, in 2010, he received an accurate diagnosis in Kelowna. He was sent to St. Paul’s, where a doctor used echo-imaging to spot a blood clot in his heart. Blood-thinning drugs destroyed the clot. A biopsy confirmed Smith needed a life-saving transplant.

“A doctor at St. Paul’s said if I hadn’t come in and been treated for what I had, I probably wouldn’t have made it to my 19th birthday,” Smith says.

He waited eight months for a heart. Less than 48 hours after surgery, he was walking laps on his hospital floor. In spite of warnings from medical staff, he ran and walked the Sun Run six weeks after receiving his new heart.

Now he comes back to St. Paul’s 13 times a year for biopsies that reveal the health of the heart. Imai assesses him during his visits.

“With Carol, it gets complicated sometimes,” Smith says. “It’s like having a second mother.”

St. Paul’s cardiac surgeons perform about 20 heart transplants per year, each surgery taking three or four hours. Recipients are carefully selected.

“They have to not have any other organ failure other than the heart, be in reasonable physical shape, have a good positive attitude and don’t have any bad social habits such as smoking, drugs, alcohol, and they must be very compliant with medical advice and appointments, and have good social support,” says cardiac surgeon Dr. Anson Cheung, who has performed more than 200 heart transplants, 150 of them at St. Paul’s.

“With the limited resources — the heart — we want to give it to the one that’s going to benefit the most and who will take care of the organ.”

Sixty per cent of the donated hearts come from B.C., with 35 per cent from nearby in the U.S. and the rest from other provinces. Hearts are matched to patients based on patient height and weight, blood group and, sometimes, types of antibodies.

St. Paul’s has 20 patients waiting on the heart-transplant list.

“You wake up every day and all you can think about is your heart, and it’s a horrible feeling,” says Lindsay Schneider, 28, an administrative assistant from Langley who is waiting for a transplant. “I’m always tired. I can’t pick up my three-year-old. I can’t walk up stairs. Some days I can’t even get out of bed.”

Schneider has a malfunctioning left heart ventricle, along with hypertrophic cardiomyopathy.

She had a defibrillator — which shocks her heart when its beats too fast — implanted in 2006. She had it replaced at St. Paul’s a week after her son, Brayden, was born in December 2008.

She’s been told to expect to wait up to a year for a new heart — her O-type blood may make it harder to find a match.

Brayden, she says, asks every day when she’s getting her transplant. “He says, ‘Mom, when you get your new heart, you can pick me up?’ And I tell him, ‘Yes.’”

While a transplant usually grants patients many more years of life — half of St. Paul’s heart-transplant recipients are still alive 20 years after surgery — staying healthy takes work and, to some degree, luck.

Most transplant patients have histories of poor health habits, including infrequent exercise, unhealthy eating and smoking, cardiac nurse Annemarie Kaan says. “People need to adjust their lifestyle to become way healthier than they probably were before,” Kaan says. “With transplantation, you trade off one set of problems for another set of problems.”

Drugs the patients must take for the rest of their lives frequently cause side effects. Katie Welsh, 32, of Cloverdale, had a heart transplant 25 years ago in the U.S. and started visiting St. Paul’s for her continuing treatment at age 16. Her medication-induced kidney disease requires annual evaluation, and she comes in twice a year to have her heart checked. “It’s got some leaks and some stuff going on, but I don’t feel sick because of it or held back because of it,” says Welsh, who has a son born in May of a surrogate mother. “I feel great. I’m very lucky.”

Cancers from the medications also occur. Skin cancer may arise because patients’ drugs lower the body’s immune response to prevent it from attacking the transplanted heart, Kaan says.

St. Paul’s transplant patients who survive surgery live an average of 20 years, compared to a national average of 10 to 13 years, says the hospital’s head of cardiology, Dr. Andy Ignaszewski. “Every year it gets a little bit better,” Ignaszewski says. “We have people now who have survived over 25 years with a new heart.”

Some transplant patients have trouble accepting that they must take drugs for the rest of their lives, says Dr. Colleen Cannon, a clinical psychologist at St. Paul’s. And while people’s bodies are usually considered private, having a transplant opens up patients to intimate discussions with neighbours, colleagues and family members, Cannon says. Frequently, transplant patients must relocate to be close to ongoing treatment facilities.

“That, of course, can affect their careers. It can affect their home. It can affect their children,” Cannon says, adding that spouses of transplant patients bear a heavy and stressful burden of care.

So far this year, surgeons at St. Paul’s have transplanted five hearts, a lower number than usual because of a shortage of donated hearts. Ignaszewski urges British Columbians to register as organ donors at transplant.bc.ca.

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